Reports About Paradoxical Lucidity from Health Care Professionals: A Pilot Study
Abstract
Although clinicians caring for persons at the end of life recognize the phenomenon of paradoxical/terminal lucidity, systematic evidence is scant. The current pilot study aimed to develop a structured interview instrument for health care professionals to report lucidity. A questionnaire measuring lucidity length, degree, content, coinciding circumstances, and time from episode to death was expanded to include time of day, expressive and receptive communication, and speech during the month prior to and during the event. Thirty-three interviews were conducted; 73% of participants reported ever witnessing paradoxical lucidity. Among 29 events reported, 31% lasted several days, 20.7% lasted 1 day, and 24.1% lasted <1 day. In 78.6% of events, the person engaged in unexpected activity; 22.2% died within 3 days, and 14.8% died within 3 months of the event. The phenomenological complexity of lucidity presents challenges to eliciting reports in a systematic fashion; however, staff respondents were able to report lucidity events and detailed descriptions of person-specific characteristics. [Journal of Gerontological Nursing, 49(1), 18–26.]
Introduction
There have been reports of lucidity in dementia, particularly in the late stages (Nahm, 2009). This phenomenon has been referred to as terminal or paradoxical lucidity (PL) and defined as “the (re-) emergence of normal or unusually enhanced mental abilities in dull, unconscious or mentally ill patients shortly before death” (Nahm, 2009, p. 89). There are few studies related to the clinical phenomenon of PL. Geriatricians, nursing professionals, and other clinicians caring for these patients immediately recognize the phenomenon when it is explained, but there is scant systematic evidence on this topic.
The formal literature on PL addresses nurses and caregivers' personal knowledge of end-of-life experiences among persons who are dying and lucidity in people with dementia. Information on terminal lucidity from a historical perspective relates to case studies of patients with mental disorders (Chiriboga-Oleszczak, 2017; Macleod, 2009; Nahm, 2009, 2011; Nahm & Greyson, 2009; Nahm et al., 2012). Chiriboga-Oleszczak (2017, p. 35) identified terminal lucidity as a “well-known phenomenon for 19th century physicians” but suggested that description of this phenomenon had almost disappeared in the 20th century. Nahm (2009) found 80 mentions of terminal lucidity by 50 different authors (physicians and psychiatrists), written in German or English dating from the 19th century. Noteworthy is that the term lucidity has been defined to include decision-making capacity with respect to discharge planning, resuscitation, financial planning, and/or selecting a power of attorney (Lim et al., 2014). Another definition of lucidity refers to a return to consciousness among individuals without dementia.
Several recent studies have identified terminal lucidity as an aspect of the end-of-life experience as reported by nurses/caregivers (Brayne et al., 2008; Claxton-Oldfield & Dunnett, 2016; Fenwick et al., 2010; Lim et al., 2020). In a study of older adults living in a nursing home, Brayne et al. (2008) reported on end-of-life experiences reported by 10 staff members, such as residents having dreams that helped them prepare for death. Lim et al. (2020) performed a 12-month retrospective medical records review of 338 deaths; three levels of consciousness among terminally ill patients were identified as occurring within 28 days of death: alert, unconscious, or sedated. Of 151 patients who died in the wards, six (4%) patients experienced terminal lucidity, all dying within 9 days of the event (Lim et al., 2020). Macleod (2009) attended 100 deaths in a hospice center and observed six episodes of what he called “lightening-up” in the last 2 days of life. Periods of lucidity lasted <12 hours. No patients had dementia but were in various stages of unconsciousness before lucidity occurred (Macleod, 2009).
Lucidity in people with dementia has been studied by asking nurses if they had observed events in which persons with dementia appeared unexpectedly clear (Brayne et al., 2008; Fenwick et al., 2010; Normann et al., 1998). In a study of older adults living in a nursing home, seven of 10 staff members interviewed reported that residents who were unconscious or confused became unexpectedly lucid before they died and were able to interact with caregivers (Brayne et al., 2008). Fenwick et al. (2010) interviewed 38 caregivers for a 5-year retrospective study and 30 of those caregivers were interviewed in a 1-year prospective study on endof-life experiences. The one item relevant to terminal lucidity was “A patient, who has been in a deep coma, suddenly becomes alert enough to coherently say goodbye to loved ones at the bedside.” Approximately one third (31%) of caregivers in the 5-year study and 79% in the 1-year study responded positively to the item (Fenwick et al., 2010).
Normann et al. (2002) and Normann et al. (2005) investigated the experiences of one woman with dementia, with whom they met for 20 hours over 2 weeks. These authors concluded that lucidity was “prompted by the conversational parties carefully focusing on topics initiated by the woman” (Normann et al., 2005, p. 895). In addition, Normann et al. (2006) examined the frequency of occurrence and characteristics of people with severe dementia who, as described by caregivers, exhibited lucidity episodes. The Multi-Dimensional Assessment Scale with additional questions on lucidity episodes was used by staff to assess 3,804 nursing home residents. Ninety-two residents evidenced severe dementia and verbal communication issues, and 52 were reported to experience lucidity episodes. These residents evidenced higher “orientation” scores, were classified as more “emotional,” and took more outdoor walks with their caregivers than those without lucidity episodes (Normann et al., 2006). An internet survey of PL was performed in Austria, Germany, and Switzerland during two time periods (between June 1, 2013 and June 1, 2015, and between May 1, 2017 and August 15, 2019) among 900 nursing and medical staff in palliative care units, neurological clinics, hospice centers, and dementia institutions (Batthyány & Greyson, 2021). The question posed was: “In the past 12 months, did you ever observe an unexpected return to clarity and cognitive function in your Alzheimer's disease or dementia patients?” According to reports from 187 respondents, 124 persons with dementia experienced an episode of PL. Data suggested that a proportion of patients with dementia seem to experience full lucidity events close to the end of life. Among patients with dementia and PL, 97% experienced the event ≤7 days before death (Batthyány & Greyson, 2021).
A workshop convened by the National Institute on Aging in June, 2018 described the scant empirical evidence and challenges related to researching this topic (Mashour et al., 2019). Stronger evidence is needed to establish the existence of and understand this phenomenon. The current pilot study represents a preliminary step in this process.
Aims
The aim of the current pilot project was to develop a measure to assess the phenomenon of PL, also described as lucidity events, as reported by health care professionals specializing in dementia and neurological impairment. The goal was to determine the feasibility of obtaining systematic descriptions from formal staff caregivers of their experiences with unexpected lucidity by conducting individual interviews using a standard set of questions. This article presents the first stages in the development of the lucidity measure and describes the findings of the pilot project.
Method
Definition
Although researchers use the term “paradoxical lucidity,” it is not understood readily by many frontline workers; thus, in our pilot work, the terms “lucidity event” or “lucidity” were used. Based on a review of the definitions extant for PL (Eldadah et al., 2019; Mashour et al., 2019; Peterson et al., 2022), the following definition was developed for use in this study: “Unexpected episodes of spontaneous mental clarity, such as the ability to communicate, in persons who had seemingly lost such abilities. This could include return to a higher level of communication, even if for a brief period.”
Measure
The purpose of the development of the Lucidity in Dementia and Neurological Impairment measure was to construct an item set that could be administered by a researcher to frontline staff about lucidity events observed among their current and past patients. Targeted staff included certified nursing assistants (CNAs), nurses, social workers, and occupational and physical therapists. Domains of interest, in addition to descriptions of the event, were expressive and receptive communication, speech, and behaviors exhibited prior, during, and after the event.
Because no such measure existed, it was necessary to collect a pool of items that could be modified for the intended purpose. The method was to review the literature and identify item sets that had been used in previous research, and to use expert review to suggest modifications to these items for use with frontline staff. The project's measurement team identified domains from the literature and focused on obtaining granular information about lucid events. All iterations and modification were adjudicated by consensus of the research team.
Thus, in preparation for the pilot work, the six-item questionnaire developed by Batthyány and Greyson (2021) was translated from German to English by a native German speaker who is fluent in English. Modifications were made to items relating to diagnosis, length of observed lucidity, degree of lucidity, content of spoken communication, coinciding circumstances, and length of time from lucid episode to death. Several iterations were developed prior to testing. The first version comprised 14 items, with one open-ended item to describe the event, including what was said and done during the event. There was a list of potential circumstances that may have occurred near the time of the event (e.g., visitor, medical event). Subsequent iterations contained reformatted items such that individual events were described in sequence from most to least recent. Space was added to record information about the second and third occurrences of lucidity observed by the care provider, either in the same or different individuals for whom they provided care. Additional items related to the lucidity event include identification by the observer of the time of day that the event began, and if any other unexpected activity (e.g., singing, playing an instrument) occurred during the event. Fifteen binary items related to expressive and receptive communication and speech in the month prior to and during the lucid event were added to ascertain the specific functions impacted during the lucid event. Nine items to assess capability in the areas of mental clarity, ability to respond to stimuli, and ability to communicate in the month prior to and during the event were added. Items are rated on a scale from 1 to 5, where 1 is complete lack of ability, 3 is moderate ability, and 5 is complete ability. Examples of items indicating more severe dysfunction include, “Make needs known” and “React to family member's presence.”
Five patient-level (sex, age, race, ethnicity, educational level) and nine informant-level demographic (e.g., age, race, ethnicity, profession) items were added to the questionnaire. These items were obtained from the informant or if not known by the informant by review of the medical record. The measure comprises approximately 200 closed-ended items and takes approximately 20 minutes to complete if no events are recorded. If one or more events are reported, the interview could last ≥1 hour.
Procedures and Sample
A RN who was also a doctoral student, supervised by a geriatric nurse researcher, conducted 33 interviews with two physicians, one nurse practitioner, 17 RNs, five licensed practical nurses (LPNs), two CNAs, one social worker, and five physical therapists working at hospitals, private offices, nursing homes, and assisted living facilities (Table 1). Interviews were conducted in-person between August and November 2019.
| Characteristic | n (%) |
|---|---|
| Profession | |
| RN | 17 (51.5) |
| LPN | 5 (15.2) |
| Physical therapist | 5 (15.2) |
| CNA/home health aide | 2 (6.1) |
| Physician | 2 (6.1) |
| Nurse practitioner | 1 (3) |
| Social worker | 1 (3) |
| Primary appointment location | |
| Nursing home | 24 (72.7) |
| Hospital | 5 (15.2) |
| Assisted living facility | 3 (9.1) |
| Private office | 1 (3) |
| Sex | |
| Female | 22 (66.7) |
| Male | 11 (33.3) |
| Age (years) | |
| 25 to 34 | 12 (36.4) |
| 35 to 44 | 6 (18.2) |
| 45 to 54 | 9 (27.3) |
| 55 to 64 | 4 (12.1) |
| 65 to 74 | 1 (3) |
| Did not answer | 1 (3) |
| Race/ethnicity | |
| Asian | 17 (51.5) |
| Black | 10 (30.3) |
| White | 3 (9.1) |
| Hispanic | 1 (3) |
| Mixed race | 1 (3) |
| Not specified | 1 (3) |
| Hispanic/Latino descent | |
| No | 30 (90.9) |
| Yes | 3 (9.1) |
| Characteristic | Mean (SD) (Range) |
| Hours spent in clinical practice (work) per week | 40.03 (5.9) (35 to 60) |
| Approximate number of patients in panel/practice/facility | 382.44 (216.41)a (4 to 520) |
| Approximate years of clinical experience | 11.56 (8.35) (3 to 32) |
Analyses
Because of the small sample size for this pilot study, only means, standard deviations, and percentages were provided.
Results
Characteristics of Informant Sample
Table 1 shows the characteristics of staff informants who reported lucidity events experienced by patients for whom they were providing care. Years of staff experience in health care ranged from 3 to 32 (mean = 11.6 years, SD = 8.4 years). Most informants reported they were Asian (51.5%) or Black (30.3%). Approximately one half (46.3%) were aged >45 years (range = 25 to 74 years). Mean hours worked per week was 40.
Characteristics of Patient Sample
Persons experiencing an event tended to be female (53.6%), White (64.3%), and non-Hispanic (75%), with an approximate mean age of 75 years (Table 2). Approximately 63% of persons experiencing an event were still living at the time of the interview, approximately 22.2% died within 3 days of the event, and 14.8% died approximately 1 week to 3 months after the event. Most patients were reported to have Alzheimer's disease (n = 12), whereas the remainder were reported to have vascular (n = 5) or “other” (n = 7) dementia. Another 36% (n = 10) of patients were reported to have other neurological impairments (e.g., stroke, traumatic brain injury) (Table 2).
| Characteristic | n (%) |
|---|---|
| Sex | |
| Female | 15 (53.6) |
| Male | 13 (46.4) |
| Race/ethnicity | |
| White | 18 (64.3) |
| Black | 3 (10.7) |
| Asian | 2 (7.1) |
| Hispanic | 2 (7.1) |
| Asian/Caucasian | 1 (3.6) |
| Caribbean/Jamaican | 1 (3.6) |
| Not specified | 1 (3.6) |
| Hispanic/Latino descent | |
| No | 21 (75) |
| Yes | 5 (17.9) |
| Unknown | 2 (7.1) |
| Educational level | |
| High school/GED | 4 (14.3) |
| Bachelor's degree | 7 (25) |
| Doctorate (PhD, MD, JD, or other) | 1 (3.6) |
| Other non U.S. degree | 1 (3.6) |
| Unknown | 15 (53.6) |
| Diagnosesa | |
| Alzheimer's disease | 12 (42.9) |
| Vascular/other dementia | 12 (42.9) |
| Parkinson's disease | 2 (7.1) |
| Other | 10 (35.7) |
| Mean (SD) (Range) | |
| Age at time of incident (years) | 74.86 (14.42) (21 to 95) |
Characteristics of Lucidity Events
Most (n = 24) informants reported they could recall at least one of their patients with dementia or a neurological disorder experiencing a lucidity event. Although most respondents indicated one person with this experience, one informant reported five persons and one reported “25% to 30%” of those for whom they have provided care. This surprisingly high number (73%) was because respondents were asked to report on any such experiences without reference to a timeframe and the likelihood that not all reports would be adjudicated as cases. This reporting method resulted in reports of 28 unique patients with lucidity events; one patient was reported to have experienced two events (29 total events).
Among 29 lucidity events reported, in approximately one half (48.3%), the person returned to full lucidity (Table 3). Thirty-one percent (n = 9) of events lasted for several days, followed by 24.1% that lasted 31 minutes to 1 hour, and 20.7% that lasted for 1 day. Most (44.8%) events occurred in the morning, whereas 34.5% occurred in the afternoon. The person spoke in all events and in 78.6% (n = 22) of events, the person engaged in unusual and unexpected activity, such as singing or playing an instrument.
| Variable | n (%) |
|---|---|
| Degree of lucidity during the event | |
| Return to full lucidity, no noticeable impairment | 14 (48.3) |
| Return to lucidity but tired due to the illness or limited in a different way | 9 (31) |
| Noticeably impaired in memory, rational thinking, or communication skill, but significantly more lucid than before | 6 (20.7) |
| Length of duration of observed lucidity event | |
| <1 minute | 2 (6.9) |
| 1 to 3 minutes | 1 (3.4) |
| 8 to 10 minutes | 1 (3.4) |
| 11 to 30 minutes | 2 (6.9) |
| 31 minutes to 1 hour | 7 (24.1) |
| Several hours | 1 (3.4) |
| 1 day | 6 (20.7) |
| Several days | 9 (31) |
| Time of day when event began | |
| Morning | 13 (44.8) |
| Midday | 2 (6.9) |
| Afternoon | 10 (34.5) |
| Evening | 3 (10.3) |
| Unknown | 1 (3.4) |
Expressive Communication and Speech
As shown in Table 4, in the month prior to the event, most patients were reported to demonstrate considerable impairment in expressive communication. For example, 55.2% were reported as exhibiting unclear speech and were understood only with difficulty; 58.6% repeatedly struggled to find the right words to use or used the wrong words; 13.8% used only gestures, grunts, or primitive symbols to communicate; 51.7% did not convey their needs; 17.2% said nothing or only moaned; and 20.7% repeated one or two words. In contrast, during the event, few were reported to experience any problems; for example, 0% were reported to have unclear speech and were understood only with difficulty, 0% did not convey their needs, 0% said nothing or only moaned, and 3.4% repeated one or two words.
| Variable | n (%) | |
|---|---|---|
| 1 Month Prior to Event | During Event | |
| Expressive communication and speech | ||
| Unclear speech and were understood only with difficulty | 16 (55.2) | 0 (0) |
| Repeatedly struggled to find right word to use, or used wrong word | 17 (58.6) | 0 (0) |
| Used only gestures, grunts, or primitive symbols to communicate | 4 (13.8) | 1 (3.4) |
| Did not convey their needs | 15 (51.7) | 0 (0) |
| Had rapid speech that was difficult to follow | 2 (6.9) | 0 (0) |
| Had speech that contained very long pauses | 7 (24.1) | 1 (3.4) |
| Had speech restricted in quantity | 13 (44.8) | 5 (17.2) |
| Had speech that was rambling, incoherent, or irrelevant | 10 (34.5) | 0 (0) |
| Had slurred speech | 4 (13.8) | 0 (0) |
| Said nothing or only moaned | 5 (17.2) | 0 (0) |
| Repeated one or two words | 6 (20.7) | 1 (3.4) |
| Receptive communication | ||
| Difficulty understanding people when they spoke | 19 (65.5) | 6 (20.7) |
| Understood by depending on lip reading, written materials, or structured sign language | 2 (6.9) | 0 (0) |
| Understood only primitive gestures, facial expressions, simple pictograms, and/or recognized environmental cues | 3 (10.3) | 4 (13.8) |
| Did not understand any type of communication | 5 (17.2) | 1 (3.4) |
| General abilitiesa | ||
| Lacks mental clarity | 19 (65.5) | 0 (0) |
| Lacks ability to communicate | 17 (58.6) | 1 (3.4) |
| Could not talk in complete sentences | 18 (62) | 0 (0) |
| Could not speak in short phrases | 18 (62) | 0 (0) |
| Could not make needs known | 20 (67.9) | 3 (9.7) |
| Could not point to objects | 15 (51.7) | 2 (6.9) |
| Could not react to family members presence | 8 (27.5) | 9 (31.1) |
| Could not respond to family | 11 (37.9) | 9 (31) |
| Could not respond to staff requests | 13 (44.8) | 5 (17.2) |
Receptive Communication
In the month prior to the event, many patients were reported to demonstrate impairment in receptive communication, but few demonstrated problems during the event. For example, 65.5% were reported to have difficulty understanding people when they spoke and 17.2% did not understand any type of communication in the month prior to the event compared with 20.7% and 3.4%, respectively, during the event (Table 4).
General Abilities to Respond to Family and Staff and Make Needs Known
Patients' general abilities were often reported as impaired in the month prior to the event, whereas these abilities were not impaired during the event. Although items were rated on a scale ranging from 1 to 5, responses of 1 and 2 were collapsed into lack of ability and 3 to 5 into ability. Examples include 65.5% versus 0% lacked mental clarity, 62% versus 0% could not talk in complete sentences, 67.9% versus 9.7% could not make needs known, and 44.8% versus 17.2% could not respond to staff requests in the month prior to versus during the event, respectively (Table 4).
Examples of Lucidity Events
One informant was a physical therapist describing an event that occurred within 1 month prior to the interview. The person had a diagnosis of mixed Alzheimer's disease and cerebrovascular accident with severe cognitive impairment. The lucidity event was observed by the therapist and family and lasted 1 to 3 minutes. The person was reported to have been noncommunicative with restricted or no speech and could not convey her needs. Her limited verbal responses were completely off-point. During a visit by family, the person was suddenly able to communicate and respond appropriately. She talked about significant people, places, and life events that family remembered, positive and negative. There was an increase in clarity of thought and the person suddenly remembered how to play an instrument. The person died 1 week later.
A second example was a nursing home resident with a reported diagnosis of vascular dementia who was nonverbal. The LPN informant and another staff member observed a period of lucidity lasting several days. The resident suddenly became verbal, asking for water. During the event, the 95-year-old woman returned to a more lucid state and was able to speak. Prior to the event she was reported to have no speech. She died within 3 months.
Another example was reported by an RN describing a 55-year-old woman with traumatic brain injury living in a nursing home. The incident was observed by the RN, other staff members, and family. The person was non-verbal and did not respond to anyone; she was described as “comatose.” However, one rainy day, the RN told the woman that her husband was not coming due to the rain. Suddenly she began speaking and talked about her husband clearly. She started participating in her own care and even laughed. She went from complete lack of ability to fully communicative. The episode lasted several days. The woman was still living at the time of the interview.
Discussion
The current study expands existing work describing the construct of lucidity by providing a pilot study of the feasibility of assessing PL systematically using a standardized interview methodology with formal caregivers. Data demonstrated the feasibility of using an informant-reported measure of lucidity events. Participation from a range of different types of health professionals working in various long-term care settings provided the opportunity for a broad perspective with respect to witnessing and describing lucidity events, thus informing the pilot measure development. In this study, 57.6% of informants had ≥10 years of experience caring for persons with dementia, enhancing their ability to provide information about lucidity events. Consistent elements of lucidity events emerged from interviews, including characteristics of those experiencing the events, length and time of occurrence, and behaviors observed.
Most respondents reported witnessing at least one incident of a person experiencing PL, corroborating the notion that it is a recognized phenomenon by caregivers (Mashour, 2019; Normann et al., 1998). Similar to previous findings (Macleod, 2009; Nahm et al., 2012), reports by respondents suggested that some persons experiencing lucidity were close to the end of life (37% died ≤3 months after the event). Because more than one half (63%) of those experiencing an event were still living at the time of report, findings also suggest the possibility that some individuals could show lucidity at different points across the continuum of dementia (Lee et al., 2014; Lee et al., 2012; Normann et al., 2006). Noteworthy are salient features of the events reported, such as the person speaking in all events and the majority (79%) engaging in unexpected activity, consistent with examples from the literature (Batthyány & Greyson, 2021; Kheirbek, 2019; Nahm et al., 2012; Normann et al., 2002; Peterson et al., 2022). Findings also highlighted the phenomenological complexity of PL regarding the variety of elements that must be captured and documented to conceptualize, define, identify, and describe behavioral correlates of lucidity (Gilmore-Bykovskyi et al., 2021). This complexity presents a challenge in terms of eliciting reports in a systematic fashion from a variety of informants, including front-line staff. The current pilot study demonstrated that the construct of lucidity may encompass more than verbal communication, including non-verbal communication; participation in activities, such as playing an instrument; and ability for self-care and mobility.
Implications for Future Research
A more accurate assessment and representation of lucidity is necessary to lead to insights into the neuroprocessing underlying this phenomenon (Morris & Bulman, 2020). Long-term goals that could emerge from future studies of lucidity include educating families about PL and the development of staff training interventions to enhance lucidity recognition and reporting. By studying the circumstances of such occurrences, it may be possible to determine situations that could trigger these incidents. As potential precursors and circumstances associated with lucidity are better understood and documented, they could prove existentially meaningful for the person and caregivers. Staff and family caregivers can be involved as witnesses, and thus, lucidity events might provide the opportunity for a mutually comforting interaction between the person and caregiver, offering an invaluable sense of reassurance and support for closure at the end of life.
Limitations and Strengths
There are some limitations to the current study. First is the use of a convenience sample. Thus, findings may be only locally generalizable; however, there was a range of respondents from different disciplines and settings, which added to the strength of the findings. The project coordinator recruited all professional health practitioners; thus, there is the potential for selection bias. In addition, these participants probably witnessed a cross-section of lucidity events, and their reports may be based on a limited sample of older adults with cognitive impairment determined by their respective professional specialties. However, the average patient panel size per informant was approximately 400, which represents a relatively large number of individuals. These data do not permit definitive conclusions regarding quantitative aspects (e.g., incidence, prevalence, frequency of occurrence) or qualitative features (e.g., time of occurrence, preceding factors) of PL. However, this study provides pilot evidence of the feasibility of obtaining staff reports of lucidity and informs the further development of a measure. Although approximately one half of events occurred within 12 months of the interview, it is acknowledged that the recall of communication, speech, and behavior, as well as the circumstances of the event, could be less accurate for events reported in the more remote past. However, it was demonstrated that staff were able to report having witnessed the phenomenon and provide detailed descriptions of its characteristics and of those who experienced it. This early research may lead to better understanding and measurement of lucidity events.
Conclusion
As highlighted by Batthyány and Greyson (2021), the promotion of systematic studies about PL will facilitate the identification and examination of the physiological and/or psychological mechanisms operating in the recovery of cognitive functions among persons with cognitive impairment who experience such events at the end of life. Such an understanding may result in the development of evidence-based clinical and therapeutic interventions that may benefit individuals with dementia and/or neurological conditions and their caregivers.
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